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New and ANGRY!

Hi, my name is PJ and I am newly diagnosed. I now realize I have had lupus for at least 15 years or possibly longer. In the beginning I was one of the fortunate ones. Most of the time I was in remission and when I was having a flare the symptoms were easily written off as too much exercise or the flu.

The in 2001 I was assaulted. The damage done to my body must have triggered the lupus. At first I was told it was the stress of what had happened to me. So I did the standard therapy for that. I relived the experience endlessly with a therapist and took anxiety meds to deal with what was supposed to be panic attacks. Every time I tried to get help the doctors just upped the meds and treated me as if I were hysterical. With time my body continued to deteriorate until I reached the point I could no longer keep going. I could no longer stand, eat or function.

That is when the surgeries began. Once my damaged gallbladder and the scar tissue tangling up my internal organs was gone the doctors said that what was left was pretty much going to be there until things reached the point I would have to have a colostomy. But then the surgeon did not want to do a colostomy for other reasons. The doctors kept telling me that my problems were the mega colon, GERD and IBS combined with stress.

By that time I had been legally disabled for 3 years and I felt that I had gone through every doctor in the area. Don’t get me wrong they were all to ready to give me medicines. I could have opened my own pharmacy. Twelve different medicines, often in multiple doses everyday. I think I averaged 15 hour of sleep a day. I could not go to church or the store because I would fall or faint. I dared not drive. I was forced to wear a diaper. After insurance I ran up $70,000 in medical bills.

Then one day I woke up in the hospital because my medicines had finally gotten the better of my body. I think if that had not happened I would be dead today because it was the wakeup call I needed. I started to really question what my doctors were doing to me. In the end I found out that my medicines basically existed to cancel each other out. One group made my bowels work and the other group controlled the pain caused by the first group. Only the second group created havoc with my bowels. I kept getting blockages in my colon and was bleeding internally on a regular basis. I took myself off all the meds and started really pushing for a colostomy.

I guess I just gave up one day. I ran into one too many of the doctors who decided that because I was a woman and had been assaulted I was sick because I could not cope emotionally. Never mind that the assault was 6 years ago. I couldn’t take the stress of being so terribly sick and having to go through the humiliation of having doctors treat me like an idiot.

Shortly after than I ended up in the ER with a suspected case of diverticulitis and possible perforated bowel. When the doctor told me that my intestines were still whole I almost started to cry. I WANTED there to be something wrong so they could fix it. I had for a long time been praying the doctors would just find it before I died from it. And again there was nothing… nothing but the pain and the illness.

I was lucky. The ER doctor was a woman and she knew from experience how easily we are overlooked and ignored by medical professionals who still see us as the weaker sex. She convinced me to go see a gastro in another town who she thought highly of.

The instant he saw me he started asking questions about a rash on my face. Then he looked at my fingers which were blue as usual. Within 15 minutes he had a tentative diagnosis of lupus. That was 2 weeks ago Monday.

The prednisone is a godsend. It ended all my symptoms. Six years of almost constant rectal bleeding, no bowl control, incredible pain, constant itching, numbness, pins and needles, chest pain, trouble breathing, nausea, vomiting, inability to stand or walk without passing out, migraines, constant infections, anemia… you name it I had it and NO ONE had thought of lupus.

We are still trying to balance my prednisone with the lupus to keep me in remission. I am at 60mg a day right now and still flaring to some degree but I actually can think and live again.

I know lupus is a really scary disease and I should be more afraid but two weeks ago I was sure I was going to die from something that no one even could recognize. The thing is I am so MAD. The doctors chose to define me by one event in my life and because of that they took the past 6 years from me. I know lupus is hard to diagnose but I honestly cannot get past the fact that dozens of doctors had seen me with even worse symptoms including the butterfly rash and they never even thought to ask me about it.

Anyway, that is my story. I guess with time I will learn to be afraid of my lupus but right now all I feel is relief that I finally know what is wrong with me.

There is no need to be afraid of Lupus. Once you start fearing it, you give up (in a manner of speaking). Use your anger (which is completely justified) to learn about Lupus, it's symptoms, the other illnesses that co-exist with it, its medications, and its treatments. Educate yourself so that no doctor can ever again dismiss you or your symptoms. Make yourself your own health advocate so that you can stand up for yourself, make informed decisions with your doctors and not allow them to tell you something that you know is not true.
The best thing that you can do is not to fear lupus, but to KNOW lupus! Know yourself and how Lupus affects you. Keep track of your symptoms, how your medications make you feel, when you flare and when you do not! Become a powerful, educated, informed advocate for your health!
We are here to help you to do this. Don't be angry...be resolved!!

PJ,
I can completely understand where you are coming from, I have been in and out of the doctors office since august! ( litterally evry other day if not 2 x in one day) I too have had many years of going to the doctors and them telling me wow I have never seen this before or hmmmmm.... that looks like it could be this or maybe you have this! well okay enough is enough im 24 yrs old and i cant take any more stress... I undertsand that in any profession you have your strenghts and your weekness but come on why is it that no one can tell me whats wrong? I kind of feel like why am i paying you? for the test you didnt have to run to rule out what you already dont know? to then turn around and suggest this doctor and that doctor for this !! they all seem to be getting paid for nothing!!
I didnt realize i was this upset but the more i think of it the more it makes me mad!
i hope you feel comfortable here, and know that all of us have a common goal " TO LIVE "
I want so many things in my life and I know its hard to feel like time has been wasted, when time could have been spent living. You just have to stay postive and realize your not alone and have so much more life yet " TO LIVE"
I 'm sending you a bunch of squeeeeeeezeing hugs ( the really good ones) :lol: 8) :!:

Thanks for the welcome y'all. If anyone sees this who has been here long enough to feel comfortable giving advice I would be really grateful if you could take a look at my post under newly diagnosed.

I thought we had everything settled and now there are a list of new tests to go through that are making me crazy. It seems my silly body did not do what it was supposed to do in relation to the prednisone. I'll spare you the rest here but if you can give me some feedback i would be very grateful. Don't know if I have it in me to keep going through this rollercoaster ride.

Been there, sort of.......My son died 10 years ago and every since then I was told that anything I brought to the Dr was because of Depression. I have many children and at least 15 years ago I was being told that it was because I had so many children. The only thing that these jerks didn't say was that it was because I was a woman. Of course, that was loud and clear in their demener.

Well anyway everything came to a head when I went to yet another dr who like yours noticed my appearance and did the right tests. I went to one rheumy who told me that what he liked to refer to one of my diagnosis was "crazy womans disease" :silly:

My present rheumy is a literal Godsend. He listens. I hope and pray that your symptoms will go in total remission. I am still waiting for mine.

Karen, I am so sorry about your son. No amount of time heals a hurt like that but you are right doctors seem to forget that hurting from a loss doesn't equal physical collapse. When my second husband died I did get sicker because of it but it was only the worsening of what was already there.

And thank all of you for your support. I will be ok with whatever I have once I know how to fight it. It is just the process of finding out what it is that is making me nuts because I have no idea how to keep from getting really sick again.